Psoriasis Severity, Health-Related Quality of Life, Work Productivity, and Activity Impairments Among Patients With Moderate to Severe Psoriasis Receiving Systemic Treatment: Real-World Data From Clinical Practice in Spain. / [Artículo traducido] Gravedad de la psoriasis, calidad de vida relacionada con la salud, productividad laboral y deterioro de la actividad en pacientes con psoriasis moderada a grave que reciben tratamiento sistémico: datos de la vida real de la práctica clínica en España.

BACKGROUND AND OBJECTIVE: The treatment of psoriasis should not only focus on skin affectations but also weigh the parameters for health-related quality of life (HRQoL), thereby tackling the concept of cumulative life course impairment (CLCI) and treating the patient from a holistic perspective. The CRYSTAL study aimed to characterize psoriasis with real-word data from Spanish clinical practice in patients with moderate to severe disease who received continuous systemic treatment for at least 24 weeks by using the absolute Psoriasis Area and Severity Index (PASI) score and its correlation to HRQoL. MATERIAL AND METHODS: This was a non-interventional, cross-sectional study conducted in 30 centers in Spain, with 301 patients between the ages of 18 and 75 years. The study collected data regarding current treatment and absolute PASI and their relationship to HRQoL using the Dermatology Life Quality Index (DLQI), to activity impairment using the Work Productivity and Activity Impairment (WPAI) questionnaire, and to treatment satisfaction. RESULTS: The mean (SD) age was 50.5 (12.5) years, with a duration of disease of 14 (14.1) years. The mean (SD) absolute PASI reported was 2.3 (3.5), with 28.7% of patients presenting with PASI from >1 to ≤3 and 22.6% with PASI>3. Higher PASI scores were associated with higher DLQI (p<0.001) and WPAI scores and lower levels of treatment satisfaction (p<0.001). CONCLUSIONS: These data indicate that achieving lower absolute PASI values may correlate not only with better HRQoL but also with better work productivity and treatment satisfaction.

Psoriasis Severity, Health-Related Quality of Life, Work Productivity, and Activity Impairments Among Patients With Moderate to Severe Psoriasis Receiving Systemic Treatment: Real-World Data From Clinical Practice in Spain.

BACKGROUND AND OBJECTIVE: The treatment of psoriasis should not only focus on skin affectations but also weigh the parameters for health-related quality of life (HRQoL), thereby tackling the concept of cumulative life course impairment (CLCI) and treating the patient from a holistic perspective. The CRYSTAL study aimed to characterize psoriasis with real-word data from Spanish clinical practice in patients with moderate to severe disease who received continuous systemic treatment for at least 24 weeks by using the absolute Psoriasis Area and Severity Index (PASI) score and its correlation to HRQoL. MATERIAL AND METHODS: This was a non-interventional, cross-sectional study conducted in 30 centers in Spain, with 301 patients between the ages of 18 and 75 years. The study collected data regarding current treatment and absolute PASI and their relationship to HRQoL using the Dermatology Life Quality Index (DLQI), to activity impairment using the Work Productivity and Activity Impairment (WPAI) questionnaire, and to treatment satisfaction. RESULTS: The mean (SD) age was 50.5 (12.5) years, with a duration of disease of 14 (14.1) years. The mean (SD) absolute PASI reported was 2.3 (3.5), with 28.7% of patients presenting with PASI from >1 to ≤3 and 22.6% with PASI>3. Higher PASI scores were associated with higher DLQI (p<0.001) and WPAI scores and lower levels of treatment satisfaction (p<0.001). CONCLUSIONS: These data indicate that achieving lower absolute PASI values may correlate not only with better HRQoL but also with better work productivity and treatment satisfaction.

Relationship satisfaction among spouse caregivers of service members and veterans with comorbid mild traumatic brain injury and post-traumatic stress disorder.

This study examined relationship satisfaction and health-related quality of life (HRQOL) among spouse caregivers assisting service members and veterans (SMV) with comorbid uncomplicated mild traumatic brain injury (MTBI) and post-traumatic stress disorder (PTSD). Spouse caregivers (N = 205) completed the Couples Satisfaction Index (CSI), 12 HRQOL measures, and the Mayo-Portland Adaptability Inventory 4th Edition (MPAI-4). T-scores were classified as "clinically elevated" using a cutoff of ≥60T. The sample was also classified into "Satisfied" (≥13.5, n = 113, 55.0%) or "Dissatisfied" (<13.5, n = 92, 44.0%) relationship categories. Using stepwise regression analysis, Anxiety, Family Disruption, Vigilance, Emotional Support, Feeling Trapped, and MPAI-4 Adjustment were identified as the strongest predictors of CSI total scores (p < 0.001), accounting for 41.6% of the variance. Squared semi-partial correlations revealed that 18.1% of the variance was shared across all six measures, with 7.8% to 1.5% of unique variance accounted for by each measure separately. When comparing the number of clinically elevated measures simultaneously, the Dissatisfied group consistently had a higher number of clinically elevated scores compared to the Satisfied group (e.g., 3-or-more clinically elevated scores: Dissatisfied = 40.2%, Satisfied = 8.8%, OR = 6.93, H = 0.76). Caring for a SMV with comorbid TBI and PTSD can have a profound impact on the spouse caregiver's HRQOL, relationship satisfaction, and family functioning. The findings from the current study continue to support the need for family involvement in the SMV's treatment plan, but more effort is needed to integrate behavioral health treatment that focuses on the family member's own issues into military TBI and PTSD systems of care.

En este estudio se analizó la satisfacción con la relación y la calidad de vida relacionada con la salud entre cónyuges cuidadores que asisten a miembros del servicio militar y veteranos con lesión cerebral traumática leve sin complicaciones concomitante con trastorno por estrés postraumático. Los cónyuges cuidadores (N=205) completaron el Índice de satisfacción de las parejas (Couples Satisfaction Index, CSI), la Encuesta de 12 ítems sobre la calidad de vida relacionada con la salud (12 HRQQL) y la Encuesta de Adaptabilidad Mayo-Portland 4.ª edición (Mayo-Portland Adaptability Inventory 4th Edition, MPAI-4). Los puntajes T se clasificaron en "clínicamente elevados" usando un valor de corte de ≥60T. La muestra también se clasificó en categorías de relaciones "satisfechas" (>13.5, n=113, 55.0%) o "insatisfechas" (<13.5, n=92, 44.0%). Utilizando un análisis de regresión paso a paso, se identificaron la ansiedad, la interrupción familiar, la vigilancia, el apoyo emocional, la sensación de estar atrapado y la adaptación de la MPAI-4 como los factores pronósticos más fuertes de los puntajes totales del CSI (p<.001), que representaron el 41.6% de la varianza. Las correlaciones semiparciales al cuadrado revelaron que el 18.1% de la varianza se compartió entre las seis medidas, con una varianza única de 7.8% a 1.5% representada por cada medida separadamente. Cuando se comparó el número de medidas clínicamente elevadas de manera simultánea, el grupo insatisfecho tuvo sistemáticamente un número más alto de puntajes clínicamente elevados en comparación con el grupo satisfecho (p. ej.: 3 o más puntajes clínicamente elevados: insatisfecho=40.2%, satisfecho=8.8%, OR=6.93, H=.76). cuidar a un miembro del servicio militar o a un veterano con lesión cerebral traumática leve y trastorno por estrés postraumático concomitantes puede afectar enormemente la calidad de vida relacionada con la salud del cónyuge cuidador, la satisfacción con la relación y el funcionamiento familiar. Los resultados del presente estudio continúan respaldando la necesidad de la participación familiar en el plan de tratamiento del miembro del servicio militar o veterano, pero se necesita más esfuerzo para integrar un tratamiento de salud conductual que se centre en los problemas propios del familiar en los sistemas de atención de militares con lesión cerebral traumática leve y trastorno por estrés postraumático.

What is the quality of life of adults with vitiligo in Mexico?

INTRODUCTION: Vitiligo is an incurable, slowly progressive skin condition, the prevalence of which ranges from 0.4 to 2.0%. Health-related quality of life (HRQoL) refers to self-perceived well-being associated with the presence of a disease and its treatment. METHODS: Cross-sectional study at a dermatological center. Adults with non-segmental vitiligo (NSV) were included, while patients with other pigmentary disorders and other types of vitiligo were excluded. The VitiQoL questionnaire (0 = no skin involvement, 90 = maximum skin involvement), the Vitiligo Extent Score (VES) and the Vitiligo Area Scoring Index (VASI) were applied. RESULTS: 492 patients did participate; 63% were women. An average score of 32.6 was obtained on VitiQoL (95% CI = 30.6-34.5). Self-perception of severity and HRQoL were correlated (r = 0.568, p < 0.001). Age, the female gender, lower education and higher self-perceived severity were associated with poorer HRQoL. The proportion of subjects who reported an addiction was similar in the worst and best HRQoL groups (28% vs. 32%, p = 0.23). CONCLUSION: Poorer HRQoL is explained by severity self-perception, concern about disease progression, appearance of the skin and necessary actions to avoid sun exposure during recreation.

INTRODUCCIÓN: El vitiligo es incurable, lentamente progresivo, su prevalencia varía de 0.4 a 2.0 %. La calidad de vida relacionada con la salud (CVRS) se refiere al bienestar autopercibido asociado a la presencia de una enfermedad y su tratamiento. MÉTODOS: Estudio transversal en un centro dermatológico. Se incluyeron adultos con vitiligo no segmentario (VNS), en tanto que se excluyeron pacientes con otros trastornos pigmentarios y otros tipos de vitiligo. Se aplicó el cuestionario VitiQoL (0 = sin afectación, 90 = máxima afectación), el Vitiligo Extent Score (VES) y el Vitiligo Area Scoring Index (VASI). RESULTADOS: Participaron 492 pacientes, 63 % mujeres. Se obtuvieron 32.6 puntos de promedio en el VitiQoL (IC 95 % = 30.6-34.5). La autopercepción de gravedad y la CVRS se correlacionaron (r = 0.568, p < 0.001). La edad, el sexo femenino, la menor educación y la mayor gravedad autopercibida se asociaron a peor CVRS. La proporción de personas que reportaron una adicción fue similar en los grupos con peor y mejor CVRS (28 % versus 32 %, p = 0.23). CONCLUSIÓN: La peor CVRS se explica por la autopercepción de gravedad, preocupación por la progresión de la enfermedad, aspecto de la piel y acciones necesarias para evitar la exposición al sol durante la recreación.

Patient-Reported Outcome Measures in Real-World Atopic Dermatitis Studies in Spain: A Systematic Review. / Medidas de los resultados percibidos por el paciente en estudios de vida real en dermatitis atópica en España: revisión sistemática de la literatura.

Atopic dermatitis (AD) is a chronic inflammatory skin disease with symptoms such as pruritus that can be a major burden for patients. Patient-reported outcomes (PRO) complement clinician-reported outcomes in AD. This systematic review aims to identify and describe patient-reported outcome measures (PROM) used in observational studies of AD over the last decade in Spain. Eighteen PROM were identified to measure 13 different PRO that assess multiple aspects of the disease, including symptoms and disease severity, impact on daily activities and on work productivity/functioning, psychosocial impact, patient empowerment, and health-related quality of life (HRQoL). HRQoL, symptoms (particularly pruritus), and anxiety/depression were the most frequently assessed PRO, and the Dermatology Quality of Life Index, the Visual Analogue Pruritus Scale, and the Hospital Anxiety and Depression Scale were the most frequently used PROM, respectively. The growing number of observational studies on AD including PROM in Spain suggests that PRO are becoming increasingly important in the management of AD.

[Health-related quality of life in patients consuming benzodiazepine]. / Calidad de vida relacionada con la salud en pacientes consumidores de benzodiacepinas.

OBJECTIVE: To describe the health-related quality of life (HRQoL) in benzodiazepine users and to verify whether there is an association with the characteristics of the treatment, its effectiveness, and the sociodemographic variables. DESIGN: Descriptive cross-sectional study. LOCATION: Family medicine consultations. PARTICIPANTS: Four hundred and fifty 2patients over 18 years of age consuming benzodiazepines or similar drugs. MAIN MEASUREMENTS: HRQoL was assessed using the EuroQol5-D questionnaire. Other variables: symptoms of anxiety or insomnia, sociodemographic variables and characteristics of the treatment. RESULTS: The mean score in health status was 62.80 (95% CI: 60.69-64.86), lower in people without studies (59.27±21.97 SD; P=.004) and lower social category (60.02±21.27 SD; P<.001). Regarding the social rate (EQ index), a mean score of 0.6025 (95% CI: 0.5659-0.6391) was obtained, higher in people with higher education (0.6577±0.3574 SD; P=.001), plus social category (0.7286±0.3381 SD; P<.001) and age less than 65 years (0.6603±0.3426 SD; P<.001). The variables that were associated with the value of the EQ index by means of multiple regression were absence of anxiety/insomnia, belonging to higher social classes, age less than 65 years and less consumption of anxiolytics/hypnotics. CONCLUSIONS: Patients who use benzodiazepines show, despite treatment, a moderate HRQL, lower than that obtained in the general population or in primary care patients. The situation is more favorable in the youngest, in those who do not present anxiety/insomnia, in those belonging to higher social classes and when the consumption of drugs is lower.

Physical and Mental Health and Functioning Among Traumatic Brain Injury Close Relatives: The Role of Posttraumatic Stress Symptoms.

Severe Traumatic brain injury (sTBI) often instigates widespread long-lasting disability and is accompanied by extensive rehabilitation. Unsurprisingly, sTBI also holds malignant consequences for patients' close relatives. The burden caused by the injury and its severity explains some of the ramifications for the relatives. Additionally, some findings demonstrate that patients with sTBI and their relatives develop posttraumatic stress (PTS) symptoms. However, although the link between PTS symptoms and physical and mental health is well-documented in literature, the effect of PTS symptoms on relatives of patients with sTBI has barely been examined. This study examines the influence of PTS symptoms of patients with sTBI and their relatives on the physical and mental health and functioning of the relatives. Patients who sustained a severe sTBI (Abbreviated Injury Scale of the head region > 3) and close relatives were included in a multi-center, prospective cohort study (TRAST-MI). One-hundred patients and their relatives were assessed at 2, 6, and 12 months post injury. Outcome variables included health-related quality of life (SF-12) as well as emotional, cognitive, interpersonal, and total functioning (PCRS). Relatives' physical health was predicted by relatives' PTS symptoms (Slope=-1.76; p = .043), and mental health was predicted by both patients' (Slope=-2.77; p = .034) and relatives' (Slope=-6.59; p < .001) PTS symptoms. Functioning level was only predicted by patients' PTS symptoms (Slope=-.25; p< .001). The findings emphasize that TBI should be considered a comprehensive traumatic experience reaching further than mere physical damage to the brain and its direct consequences, affecting the injured individual and close relatives.

El traumatismo craneoencefálico grave (TCEG) generalmente provoca una discapacidad duradera generalizada y está acompañado por una larga rehabilitación. Como es de esperarse, el TCEG también tiene consecuencias nocivas para los familiares cercanos de los pacientes. El agobio causado por la lesión y su gravedad explica algunas de las repercuciones en los familiares. Además, algunos resultados demuestran que los pacientes con TCEG y sus familiares desarrollan síntomas de estrés postraumático (EPT). Sin embargo, aunque la asociación entre los síntomas de EPT y la salud física y mental está bien documentada en la bibliografía, el efecto de los síntomas de EPT en los familiares de los pacientes con TCEG casi no se ha analizado. Este estudio analiza la influencia de los síntomas de EPT de los pacientes con TCEG y sus familiares en la salud física y mental y en el funcionamiento de los familiares. Se incluyó a pacientes que sufrieron un TCEG (escala abreviada de lesiones de la región craneana > 3) y a familiares cercanos en un estudio de cohorte prospectivo realizado en varios centros (TRAST-MI). Se evaluó a cien pacientes y a sus familiares a los dos, a los seis y a los doce meses después de la lesión. Entre los criterios de valoración se encontraron la calidad de vida relacionada con la salud (SF-12) así como el funcionamiento emocional, cognitivo, interpersonal y total (PCRS). La salud física de los familiares se predijo mediante los síntomas de EPT de los familiares (Pendiente = -1.76; p = .043), y la salud mental se predijo mediante los síntomas de EPT de los pacientes (Pendiente = -2.77; p = .034) y los familiares (Pendiente = -6.59; p < .001). El nivel de funcionamiento solo se predijo mediante los síntomas de EPT de los pacientes (Pendiente = -.25; p < .001). Los resultados enfatizan que el TCE debe considerarse una experiencia traumática amplia que va más allá del mero daño físico al cerebro y sus consecuencias directas, y que afecta a la persona lesionada y a sus familiares cercanos.

Prevalence of iron deficiency without anaemia in inflammatory bowel disease and impact on health-related quality of life. / Prevalencia de déficit de hierro sin anemia en la enfermedad inflamatoria intestinal y su impacto en la calidad de vida.

INTRODUCTION: Iron deficiency without anaemia (IDWA) is commonly found in outpatients with inflammatory bowel disease (IBD) in an even higher proportion than anaemia. However, its true prevalence and possible impact on health-related quality of life (HRQoL) are unknown. The objectives of this study were: to establish the prevalence of IDWA, identify possible associated factors and measure their impact on HRQoL. MATERIAL AND METHODS: 127 patients with IBD in an outpatient setting were consecutively included in an observational, descriptive, cross-sectional study. IDWA was defined as ferritin levels of <100 ng/ml with inflammatory activity or ≤30 ng/ml without it, with transferrin saturation of ≤16%, and with normal haemoglobin levels. HRQoL was assessed using two questionnaires: the IBDQ-9 for symptoms related to IBD and the FACIT-F to measure the presence of fatigue. Fatigue was considered extreme with a score of ≤30 points. RESULTS: The prevalence of IDWA was 37%. Variables associated with its occurrence were female gender (OR=2.9; p=.015) and the presence of inflammatory activity (OR=9.4; p=.001). Patients with IDWA presented HRQoL questionnaires with lower overall scores; decreases of 6.6 (p<.001) and 4.3 (p=.037) points in the IBDQ-9 and the FACIT-F were recorded, respectively. In addition, an increase of 29.4% in the presence of extreme fatigue was observed. CONCLUSION: The prevalence of IDWA is considerable in outpatients with IBD. IDWA is associated with female gender and inflammatory activity. It has a clear negative impact on HRQoL. A more active approach is needed to treat this complication.

[Prevalence and characterization of overactive bladder detected in a population in Madrid with self-administered OAB-V3 questionnaire in Primary Care]. / Prevalencia y caracterización de la vejiga hiperactiva detectada en una población de Madrid con el cuestionario OAB-V3 autoadministrado en atención primaria.

OBJECTIVE: Determining the prevalence of symptoms suggestive of overactive bladder (OAB) in a Spanish population and evaluate the impact of these symptoms on well-being and labour productivity in this population. DESIGN: Transversal study. LOCATION: Primary health care, Madrid, Spain. PARTICIPANTS: Males and females >30 years. INTERVENTIONS: Classification by primary care physicians with the Overactive Bladder Awareness Tool abbreviated version (OAB-V3). Subjects with score ≥3 and a similarly balanced control population with score <3 were clinically investigated. PRINCIPAL MEASUREMENTS: History, physical examination, urinalysis, sonography, general well-being scale and the questionnaires PPBC, OAB-q y WPAI-SHP. RESULTS: A total 923 subjects were screened, of which 209 (22.6%), 35% males and 65% females, had probable OAB. Age distribution increased from 11.1% in 4th decade to 44.4% in 9th decade. Kappa coefficient between suspected OAB and definite diagnosis was .83. The area under ROC curve for diagnosis based on OAB-V3 questionnaire and the presence of perceived bother and coping strategies was 92%. Subjects classified by score ≥3 had worse well-being, higher PPBC score and worse parameters on total OAB-q and transformed scores for each OAB-q subscale (P<.0001). In these subjects labour productivity was not affected (P=.14) but the capacity to perform regular activities was (P<.0001). CONCLUSIONS: OAB-V3 is a simple questionnaire to screen OAB with good predictive accuracy in a primary care setting and reveals important implications on health related quality of life issues.

[Psychosomatic symptoms as an expression of the deterioration of the health-related quality of life in adolescents]. / Síntomas psicosomáticos como expresión del deterioro de la calidad de vida relacionada con la salud en adolescentes.

AIM: To analyze, in a population of adolescents in school, the relationship between psychosomatic symptoms and the perception of health-related quality of life (HRQoL), differentiating by gender and age group. DESIGN: Transversal study. LOCATION: Five Secondary Schools. PARTICIPANTS: Eight hundred and forty four adolescents between the ages of 15 and 18 in secondary school. MAIN MEASUREMENTS: HRQoL using KIDSCREEN-52 and psychosomatic symptoms with the psychosomatic problems scale (PSP). RESULTS: Girls and adolescents aged 17-18 years presented significantly higher psychosomatic symptoms, both groups also scored worse in all dimensions of HRQoL, although only the dimensions related to physical and mental wellness, mood and stress reached significance. All psychosomatic symptoms were inversely associated with the ten dimensions of KIDSCREEN-52. The regression models showed that sadness, concentrating difficulties and sleeping difficulties were the predictors of worse HRQoL in both sexes and age groups and these variables explained between 30 and 41% of the HRQoL variance of the adolescents. CONCLUSIONS: Psychosomatic symptoms are frequent especially in girls and in older adolescents and predictors of worse HRQoL. It is important to distinguish them from medical conditions to avoid unnecessary interventions. As expressions of emotional discomfort they must be evaluated and treated in an integral way because they interfere with daily life and increase the vulnerability proper of adolescence.

Health-related quality of life in patients with spinocerebellar ataxia. / Calidad de vida relacionada con la salud en pacientes con ataxias espinocerebelosas.

INTRODUCTION: The progressive deterioration of patients with spinocerebellar ataxia (SCA) has a major impact on their health-related quality of life (HRQOL). This study evaluates HRQOL in a sample of patients diagnosed with SCA and aims to estimate the predictive ability of a set of sociodemographic variables for the different dimensions of the General Health Questionnaire. METHODS: A total of 80 patients diagnosed with SCA were assessed using a sociodemographic questionnaire and the SF-36 General Health Questionnaire. The sociodemographic variables studied were sex, age, presence of a carer, employment status, and time elapsed from diagnosis of the disease. RESULTS: The 8 subscales of the SF-36 show positive and significant correlations to one another. Mean scores obtained on each SF-36 subscale differ between women and men, although this difference is significant only on the general health subscale, with men scoring higher than women. We found significant age differences on the vitality and social function subscales, with higher scores among younger patients (< 34 years). The variable 'presence of a carer' accounts for most of the total variance of the questionnaire. CONCLUSIONS: The SF-36 is a valid and useful instrument for evaluating HRQOL in patients diagnosed with SCA. Presence of a carer seems to be a determinant of self-perceived quality of life in these patients.

Health-related quality of life in caregivers of patients with Alzheimer's disease. / Calidad de vida relacionada con la salud en cuidadores de pacientes con enfermedad de Alzheimer.

INTRODUCTION: Informal caregivers of patients with Alzheimer's disease (AD) have a poor health-related quality of life (HRQOL). HRQOL is an increasingly common user-focused outcome measure. We have evaluated HRQOL longitudinally in caregivers of AD patients at baseline and at 12 months. METHODS: Ninety-seven patients diagnosed with AD according to the NINCDS-ADRDA (National Institute of Neurological and Communicative Disorders and Stroke, and Alzheimer's Disease and Related Disorders Association) and their 97 respective primary caregivers were included in the study. We analysed the following data at the baseline visit: sociodemographic data of both patients and carers, patients' clinical variables, and data related to the healthcare provided to patients by carers. HRQOL of caregivers was measured with the SF-36 questionnaire at baseline and 12 months later. RESULTS: At 12 months, primary caregivers scored lower in the 8 subscales of the SF-36 questionnaire; differences were statistically significant in all dimensions except for 'physical function' and 'social function'. Baseline scores in our sample were lower than those of the general population. 'Vitality' is the dimension that presented the lowest scores. CONCLUSION: HRQOL in caregivers of patients with Alzheimer's disease deteriorates over time and is poorer than that of the age- and sex-matched general population.

Impact on Quality of Life in Dermatology Patients Attending an Emergency Department.

INTRODUCTION: Dermatological complaints have been estimated to represent up to 5-10% of all the visits to emergency departments. The main objective of our study was to determine how affected is the Health related Quality of Life (HRQL) in a series of patients attending an emergency department due to skin symptoms. PATIENTS AND METHODS: A prospective study during one month (July 2016) was conducted in a hospital with full-time on-call dermatologists. The Short-Form SF-12v2 Health Survey and the Dermatology Life Quality Index (DLQI) were offered to all the patients over 18 years old attending the emergency department with cutaneous complaints. Clinical and epidemiological characteristics were also collected. RESULTS: In total 108 patients completed the study. Mean age found was 45.1±16.1 years. Mean DLQI score found was 10.56±6.12. Fifty-three patients (49%) had a score of 11 or higher in the DLQI questionnaire. Most affected subscales were "Symptoms and Feelings" in DLQI scale and "Overall Health" and "Vitality" for the SF-12. A very significant difference (p<0.0001) was found between women's (12.4±5.7) and men's (7.5±5.6) DLQI mean score (mean difference of 4.9; 95% confidence interval of the difference: 2.7-7.1). CONCLUSIONS: Patients visiting emergency units with cutaneous complaints seem to feel a moderate-large impact on their quality of life which is mainly related to the symptoms and feelings that they are experiencing. This impact is significantly higher among women.

[Prospective validation of the Spanish version of the Short Form-Liver Disease Quality of life]. / Validación prospectiva de la versión corta en español del test específico de calidad de vida Short form-liver disease quality of life (SF-LDQOL) para hepatopatías crónicas y trasplante hepático.

UNLABELLED: Health-Related Quality of Life (HRQL) assessed by a specific, validated, brief test is an important measure of the health status perceived by patients diagnosed with chronic liver disease. AIM: To prospectively validate the SF-LDQOL (Short Form-Liver Disease Quality of Life) instrument in Spanish, in patients diagnosed with liver disease of diverse etiologies and distinct severity levels, attended at the Hospital Universitari de Bellvitge (Barcelona). METHODS: This observational, longitudinal study was conducted by using the SF-LDQOL in outpatients diagnosed with chronic liver disease. This instrument contains the generic SF-36 test, and 9 liver disease-specific dimensions. We also evaluated socio-demographic features, the number of missing responses, and internal consistency (Cronbach's alpha), as well as Pearson's correlation between SF-36 and SF-LDQOL scores on specific dimensions by means of a multi-trait multi-method technique. The sample consisted of 340 patients. RESULTS: In 6 out of 9 liver disease-specific dimensions, reliability coefficients for internal consistency exceeded 0.70. The convergent validity of these items was acceptable in 8 out of 9 dimensions, with a scaling success of 100% in each item. Missing items were under 1.5% in all dimensions, except for Sexual Functioning. CONCLUSIONS: The Spanish version of the SF-LDQOL has, in general, good psychometric properties, making it a useful instrument for clinical practice in a population of patients diagnosed with chronic liver disease, with or without liver transplantation.

Mortality and functional status at one-year of follow-up in elderly patients with prolonged ICU stay. / Mortalidad y estado funcional al año de pacientes ancianos con ingreso prolongado en una unidad de cuidados intensivos.

OBJECTIVE: To evaluate mortality and functional status at one year of follow-up in patients>75 years of age who survive Intensive Care Unit (ICU) admission of over 14 days. DESIGN: A prospective observational study was carried out. SETTING: A Spanish medical-surgical ICU. PATIENTS: Patients over 75 years of age admitted to the ICU. PRIMARY VARIABLES OF INTEREST: ICU admission: demographic data, baseline functional status (Barthel index), baseline mental status (Red Cross scale of mental incapacity), severity of illness (APACHE II and SOFA), stay and mortality. One-year follow-up: hospital stay and mortality, functional and mental status, and one-year follow-up mortality. RESULTS: A total of 176 patients were included, of which 22 had a stay of over 14 days. Patients with prolonged stay did not show more ICU mortality than those with a shorter stay in the ICU (40.9% vs 25.3% respectively, P=.12), although their hospital (63.6% vs 33.8%, P<.01) and one-year follow-up mortality were higher (68.2% vs 41.2%, P=.02). Among the survivors, one-year mortality proved similar (87.5% vs 90.6%, P=.57). These patients presented significantly greater impairment of functional status at hospital discharge than the patients with a shorter ICU stay, and this difference persisted after three months. The levels of independence at one-year follow-up were never similar to baseline. No such findings were observed in relation to mental status. CONCLUSIONS: Patients over 75 years of age with a ICU stay of more than 14 days have high hospital and one-year follow-up mortality. Patients who survive to hospital admission did not show greater mortality, though their functional dependency was greater.

[Health-related quality of life in patients with amyotrophic lateral sclerosis]. / Calidad de vida relacionada con la salud en pacientes con esclerosis lateral amiotrófica.

INTRODUCTION: Progressive deterioration in patients with amyotrophic lateral sclerosis (ALS) has a major impact on their health-related quality of life (HRQOL). The objectives of this study are to evaluate HRQOL in a sample of patients diagnosed with ALS and estimate the predictive capability of a set of sociodemographic variables for the different scales covered by a general health survey. METHODS: A total of 63 patients diagnosed with ALS were assessed using a sociodemographic questionnaire and the SF-36 general health survey. The sociodemographic variables studied were sex, age, presence of a caregiver, employment status, and time from diagnosis of disease. RESULTS: The SF-36 survey shows positive correlations between the different scales composing it, which proves its reliability. The mean scores obtained for each of the SF-36 scales were higher in men than in women, although the only statistically significant difference was for the Physical Role scale. The lowest age range (less than 56 years) presented the highest mean scores for most of these dimensions. Most of the variance in the test is explained by the variable 'presence of caregiver'. CONCLUSIONS: The SF-36 health survey has been confirmed as a valid and useful tool for evaluating HRQOL in ALS patients, and it discriminates between patients in different states of health according to their level of dependency.

[Patient evaluation and outcome measures]. / Evaluación del paciente y medida de resultados.

Both the initial evaluation and follow-up of patients with osteoarthritis require systematic evaluation of the indicators that provide information on the degree of involvement of the disease and allow its quantification. Reliable measures of disease progression help decision-making by clinicians and provide valid information on treatment response and the effectiveness of the distinct therapeutic interventions. The instruments recommended in research, as outcome measures in osteoarthritis, are pain evaluation, assessment of physical function, and self-reported global evaluation. In studies lasting more than 1 year, structural changes are evaluated through simple X-ray. Self-reported quality of life assessment and physician global assessment are also recommended as options. These indicators should be incorporated into routine clinical practice for adequate evaluation and correct follow-up of patients with osteoarthritis. The recommended pain evaluation method for use in clinical practice is the visual analog scale (VAS). The best instrument to evaluate physical function in patients with hip or knee osteoarthritis is the WOMAC scale (Western Ontario and McMaster Universities Osteoarthritis Index). For patient-reported global assessment in routine practice, the recommended scales are VAS or the SF-12 (12-item short-form health survey).

[Risk factors for the deterioration of quality of life in critical trauma patients. Assessment at 6 and 12 months after discharge from the intensive care unit]. / Factores de riesgo de deterioro de calidad de vida en pacientes traumáticos críticos. Valoración a los 6 y 12 meses del alta de la unidad de cuidados intensivos.

OBJECTIVE: To evaluate factors influencing the deterioration of health-related quality of life (HRQoL) in trauma patients admitted to an ICU. DESIGN: A prospective observational study was carried out. SETTING: The combined medical/surgical ICU in a university secondary hospital with 24-hour neurosurgery service. PATIENTS: Trauma patients admitted to the ICU during a two-year period. HRQoL assessment prior to admission to the ICU, and at 6 and 12 months after discharge. MAIN VARIABLES: Demographic variables, type and severity of injury (AIS), severity (APACHE II, ISS, TRISS), length of stay, procedures, mortality and HRQoL according to the SF-36 and EQ-5D. RESULTS: We completed the monitoring of 110 patients that showed significant impairment of their HRQoL in all the dimensions assessed. According to the SF-36, physical role was more deteriorated at 12 months, but the mental component decreased more than the physical component after 6 months. The VAS scale of the EQ-5D decreased to 55 at 6 months (19) and increased to 66 at 12 months (17). In the multiple logistic regression analysis, the variables associated with poorer HRQoL were age > 45 years, TRISS > 10, previous porer quality of life, and serious injuries in the extremities. CONCLUSIONS: Patients showed marked deterioration of their HRQoL at 6 months, followed by overall improvement at 12 months, though without reaching their previous state. The factors that determine poorer quality of life include age, severity, previous HRQoL, and severe injuries in the extremities.

[Effectiveness of early pelvic muscle training on pelvic floor strength, urinary incontinence symptoms, sexual function, and quality of life in post-radical prostatectomy patients: Systematic review of randomized clinical trials]. / Efectividad del entrenamiento muscular pélvico temprano en la fuerza de suelo pélvico, síntomas de incontinencia urinaria, función sexual y calidad de vida en pacientes posprostatectomía radical: revisión sistemática de ensayos clínicos aleatorizados.

This study aimed to evaluate the effectiveness of early pelvic muscle training in reducing urinary incontinence symptoms, improving quality of life, sexual function, and increasing pelvic floor strength in post-radical prostatectomy patients. A search was carried out in 8 databases until October 26, 2022, the methodological quality and the risk of bias of 14 included studies (n=1236) were evaluated, moreover, the evidence and the meta-analysis were calculated. The intervention significantly reduced urinary incontinence symptoms compared to a control group (SMD=-2.80, 95% CI=-5.21 to -0.39, P=.02), with significant heterogeneity (I2=83%; P=<.0001) and moderate evidence. In addition, it presented moderate evidence to improve quality of life, and very low evidence to improve sexual function and pelvic floor strength. These results should be viewed with caution due to the significant heterogeneity of the studies analysed.

The burden of disease and quality of life in patients with acute hepatic porphyria: COPHASE study.

BACKGROUND: Acute hepatic porphyria (AHP) comprises a group of rare genetic diseases characterized by neurovisceral crises that are manifested by abdominal pain and neurological and/or psychological symptoms that interfere with the ability to lead a normal life. Our objective was to determine the burden of the disease in one year and the health-related quality of life (HRQoL) in patients with AHP. RESULTS: 28 patients were analyzed. The mean age was 36.6±10.2 years, 89.3% were women, and the average number of crises was 1.9±1.5. The average annual cost per patient was €38,255.40. 80.2% of the costs was direct medical costs, 17.5% was associated with loss of productivity and 2.3% was direct non-medical costs. 85.9% of the total cost corresponded to the crises. The intercrisis period accounted for the remaining 14.1%. The global index of the EQ-5D-5L (HRQoL) was 0.75±0.24. The dimensions of pain/discomfort, anxiety/depression and daily activities were the most affected. Leisure, travel/vacations and household activities were the most affected daily activities. 53.6% of patients required a caregiver due to AHP. 92.9% did not present overload and 7.1% presented extreme overload. CONCLUSIONS: Patients with AHP are associated with a high economic impact and an affected HRQoL in the pain/discomfort dimension, with a negative impact on the performance of daily activities and a risk of psychiatric diseases.